Personal Stories

Jennifer's Story

Jennifer's Story  

  • Location:       Ohio
  • Born:             1993
  • Diagnosis:      Unilateral PFFD, left leg
  • Treatment:      Foot amputation, knee fusion, prosthesis
  • Told by:         Dad with notes from Mom
  • Date written:  1/22/97 - 5/15/97


  • In the beginning.....

    Cost of super hip operation and each lengthening operation

    Hi, as I wait for an estimate from Dr Paley's hospital, I would like to get a feel of the cost of super hip operation and lenghthening, and also duration between the super hip operation and lengthening. Are there extra charges/taxes for patients from outside US? Am from Nairobi - Kenya... Please Help

    Simon

    looking for friends

    I would love to meet someone who shares PFFD with me. I get a lot of laughs and such but I don't mind. I am used to it. I would however love to talk to people who are just like me. A friend is using her internet to do this but she will give you my phone number if you have free long distance. We can discuss our stories. Not looking for love, but if it happens it happens. So if your male or female that wants to talk please let me know.

    Any one have any questions about PFFD?

    Hi, I am new to this site. Did not know it even exsisted. When I first researched about my PFFD there were hardly any information about it. But I am here for anyone to ask any questions. I am 20 years old , so feel free to ask anything.

    Raegyn my Rae of Sunshine

    Hi, my name is Natalie and my daughter Raegyn is 4 months old and has PFFD of her right femor. We're just getting started on our journey and she already had one fracture of the femor. I really don't know what to expect and our doctor is kinda of a fast talker and is telling us that theres nothing to do right now, but as a mother I'm sure that most understand that when there's something wrong with your child your natural reaction is to worry. I would like to get in touch with someone to talk about the what-if's, the what next, and the how comes.

    Dylan's Journey

    Hello, my name is Amanda, and I am a parent of a little boy with PFFD. Dylan is 2 years old and was diagnosed last September (2009). He is scheduled for a hip osteotomy next summer (2011). I am not really sure what that means, other than that he will be in a cast from his chest to his legs for 4-6 weeks after that. I am afraid what that will mean for him, because he is a VERY active little boy. The reason I joined this website was to connect with other parents about what to expect in the coming months and years; from surgeries - to his entire future.

    How early can lengthening start?

    Hi, My daughter Ayanna has unilateral PFFD. She is now 1yr 3 months, I was wondering how early lenghtening procedures can start? The doctors I have met have told me that they will advice me in due course!! I need to know to plan!! Please help

    Simon

    people affected by pffd in nairobi - kenya

    Hi, am looking for people with pffd or those affected by it by being parents or friends/family of people with pfffd in nairobi, so that we can network and work together. Kindly get in touch with me, my email is skinuthia2001@yahoo.com

    regards

    simon

    Shane

    Hey all its been a while shanes almost 3 and growing like a weed!!!

    Medical Insurance

    Some of you might be interested in this information when choosing medical insurance. It is stuff that I have gathered from personal experience.

    Syndicate content